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Don’t be fooled: caring about patients is not patient centricity | Savvy Cooperative | #AskPatients

This is the first of a five-part series. Read the second part here.

I started Savvy Cooperative 5 years ago to solve one piece of the patient-centricity puzzle: to help companies and innovators connect directly with diverse patients and caregivers.

I didn’t mean to start a company, but I saw this need firsthand. Prior to founding Savvy, I had a meandering path through healthcare: 

  • I was a human factors engineer helping companies do usability studies
  • I was an academic studying patient-centered outcomes to ensure clinical trials measured things that mattered to patients
  • I was an FDA advisor making sure that sponsors and regulators thought about the greater impact of their therapies beyond clinical measures 
  • And of course, I was a patient with a lifetime of chronic illness experience

Caring about patients isn't enough

With visibility across the ecosystem and into industry, academia, and regulatory bodies, I saw a void. I had a front row seat to hear what all of these stakeholders were talking about, and spoiler alert: what they were talking about and what my patient peers were talking about did not align. 

I saw this over and over again. My fabulous, well-meaning professional colleagues wanted to do right by patients, but they lacked all the information that they needed to make the best products and services. What was missing was the patient perspective. And without that perspective, they were just guessing what patients want and need. 

When I tell people outside of healthcare about Savvy and that we help companies talk to patients for market research, UX testing, or input into clinical studies, they don’t greet me with “what a fabulous idea!” Instead they ask, “Why doesn’t it already exist? Isn’t it obvious they should be talking to patients?” 

The healthcare industry to outsiders

That’s because in every other industry they DO talk to their end-users, but healthcare has so many stakeholders that patients are often left out of the conversation because historically people have believed that doctors, payors, or sponsors know what’s best for patients (excuse me while I wait for my eyes to roll back in place). 

Let's unpack this.

If you bought a car, you’d be the one to pick it, pay for it, and use it. In healthcare, it’s often the provider who picks  it, an insurance company who pays for it (hopefully), and then we—obedient patients—are expected to use it...and pray that it is helpful. 

It is not uncommon that we patients are prescribed the Hummer of treatment plans, regardless of if we have a place to “park” it at home. If decision makers had bothered to ask diverse patients, they may have learned that patient needs may be more in line with a Corolla, a bicycle, a subway card…or even a boat. 

But the folks who designed it sure do care about patients, so that makes it okay that it is a nuisance for patients, right? 

The slow evolution of patient centricity 

The good news is that the industry is coming around and wants to be more patient-centered. It's just that I have spent the last decade+ watching them struggle to actually do it.

And it was during this time that I started getting more and more involved to help set the record straight for my colleagues. I am very open about my diagnoses and patient experiences, and soon I was being asked to be the patient representative on committee after committee, project after project. While I was flattered at first, I quickly became deeply uncomfortable.

As someone who is white, with a PhD, living in NYC, and working in healthcare, I could not possibly speak on behalf of all patients with my condition, let alone more broadly outside of it. 

KOLs aren't inclusive. Period.

I represent a millennial living in an urban setting, with high health literacy, good health insurance, strong social support, and of course the inherent privilege of being white. Sure, my perspective is valid and important, but it is not the only perspective you should hear. 

Want to know what it’s like to live with my same condition for an African American man living in a rural setting, single parenting young children, with unstable employment and insurance? Well don’t ask me—ask the right patients! 

And that, my friends, is what Savvy set out to solve. 

If we only ask a subset of the population, then we risk only innovating for a subset of the population. You don’t need a PhD to see that, and you shouldn’t need a PhD to have your voice heard. 

Tune in next week as I continue to unpack the perils of not doing the work to create inclusive innovations.

Thanks for reading! Continue the series with part two here.

Jen Horonjeff, PhD, is a life-long autoimmune disease patient and brain tumor survivor turned human factors engineer, academic, FDA advisor, and now the founder & CEO of Savvy Cooperative.

Savvy Cooperative helps the healthcare industry create patient-centered products and solutions by providing a marketplace for patient insights. Pharma and startups alike can connect directly with patients to participate in clinical, UX, and market research. Savvy’s unique co-op model leverages its members’ networks to quickly recruit diverse patients, and pays patients for sharing their insights! Savvy’s award-winning co-op has been featured in FastCompany, TechCrunch, The Boston Globe, and named one of the 50 Most Daring Entrepreneurs by Entrepreneur Magazine.

Jen Horonjeff
Post by Jen Horonjeff
May 6, 2021
Jen Horonjeff, PhD, is a life-long autoimmune disease patient and brain tumor survivor turned human factors engineer, academic, FDA advisor, and now the founder & CEO of Savvy Cooperative.